I work in progressive politics, specifically with marginalized communities. There, we talk a lot about the power of storytelling: crafting a narrative in such a way to convince a policymaker to make or change a decision about something, moving people to the polls based on a candidate’s narrative, or telling our own personal stories to help shift expectations about what people like us or our families can achieve.
So when I was thinking about what to write about parenthood for Mother’s Day, it seemed natural to draw on my own experiences, which have moved from solely being an advocate within the disability community to teaching my son how and when to advocate as he gets older. Earlier in the school year, he had gone through some bullying drama with a classmate. It led to all kinds of discussion in our household on how to deal with such situations from the perspectives of parents, kids, marginalized communities, education policy leaders, and others. It was a really tough few weeks, but recently, we’ve seemed to break through to the other side of it.
I started sketching out an outline in my head using this story as a hook. I thought about the different angles it could take and felt like I had a great sense of it—until on our commute Monday morning.
I asked him, “Can I write about the conversation your dad and I had to have with your school earlier this year?”
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“About my problem with my classmate?” he asked.
“No,” he replied.
He was right. It’s not my story to tell. And being a good mom, especially in this digital age, means teaching my kids that they have the right to consent, or not consent, to how their images, their words, their bodies, and their experiences are used.
That may sound pretty typical, but for people from marginalized groups, bodily autonomy is often treated as a luxury. The intersection of ableism and racism, for instance, is a frequent topic of conversation in our house. As the mom of biracial disabled kids, I often talk to them about what it means for children—specifically kids of color—to be able to just be kids, without fear of being viewed with unwarranted suspicion and prejudice, without fear that a neighbor won’t mistake a candy bar for a gun. Nowadays, that type of freedom to be a kid is far too rare for Black and brown young people. As we know from the ongoing murders of Black and brown youth at the hands of the state, the bodily autonomy of people of color is too often undermined or ignored altogether.
And when it comes to consent and disability, the internet is full of families of disabled people sharing stories, asking for tricks of the trade, and just plain venting. These exchanges walk the line from being informative to being exploitative. For every thoughtful question about what car seat works best, there are five posts of parents sharing photos of their children in various states of undress asking if an impairment or ailment “looks normal.” When disabled adults ask whether those children were asked for their consent before their images were shared, the concern is typically met with defensiveness and assertions that parents know best. We understand it’s hard for families to think about the impact of their actions on their child 20 years or so down the road, but this is also where there is value in trusting the lived experiences of disabled people.
We deal with people taking videos of nondisabled people helping us and putting it online without our permission. We deal with being framed as inspiration porn or motivation for nondisabled people to go to the gym. We deal with being seen as medical anomalies or miracles of modern science (depending on the perspective of the physician). Nondisabled allies can be bothered by it, can be made uncomfortable or enraged by it—but they cannot, and do not, experience the violation the same way we do.
It makes me ask the question: When do we internalize the notion that we don’t have a right to bodily or narrative autonomy? The crux of the problem, for me, is that we aren’t taught as children that we have the right to consent. While nondisabled parents generally raise nondisabled kids to not let strangers touch their bodies, or not to talk about their private matters to people in public, disabled kids are taught to share everything.
As a little person, I was in the hospital frequently as a kid—certainly way more than my nondisabled friends. I remember my parents talking to me ahead of time about being respectful to the doctors, to remember that they were also teachers and many of the doctors who entered my room at various points in time were students themselves, and that we had a responsibility to help them learn, help them be better doctors for people like us. Never once did my parents tell me that I had the right to say “no” to an exam, “no” to a creepy person on the street talking to me, “no” to an invasive question from a “well-meaning” relative.
When I was 5, I remember seeing one of my surgeries on CNN. Not only do I remember seeing it, I remember my parents recording the story about it on our VCR. They never told me it was filmed. Even though you couldn’t see my face in the story, as a little kid, it really bothered me that my body was depicted without anyone asking me if it was OK or not. Decades later, when on an exam table having a four-hour Pap smear, I felt unsure of my right to be upset that the doctor administering clearly lacked experience working with a woman like me and was using me as a tutorial for all of her interns, fellows, and other colleagues. Even then, as an adult, I didn’t feel then that I had the right to say “no.”
And this reaches into relationships. Often people with disabilities aren’t taught that they have the right to decide who their friends are, who they are in relationships with, if at all. Coming from the dwarfism community, with a rich history of multi-generational families, I didn’t realize how rare it was for disabled people to date until I met friends who were in their 30s or older who told me that their parents would never approve of them dating anyone. Or that their families forced them to break up with a first love because it wasn’t “safe” for them to decide what was best for themselves.
I think my parents’ generation had a different feeling about our “responsibility” to educate as disabled people: that increased “awareness” would result in increased “equality.” Part of me agrees with this and sees the need to do “dwarforientations” as a necessary evil of most new jobs or long-term social settings to put nondisabled people at ease about disability. We do this partially for us, to avoid the long drawn-out awkward conversation with each person, the asking of the same question over and over again, the need to tell one’s story in such a way to ensure that your ability to do the job you were hired to do is beyond question.
But the activist in me feels like giving away one’s story is giving away one’s power. It’s not on those of us from marginalized communities to have to make ourselves vulnerable in order to educate the masses. To prove to our peers that we have a right to be at the table—that we’re worthy of equal treatment, equal respect, equal dignity. The right to own your story and your body, and the right to determine what should and shouldn’t be shared, are central tenets of personhood that need to be talked about more in marginalized communities.
Now as a parent when we visit with specialists, I make sure that my kids know what’s happening and that at any point they can say “no” to medical procedures, to sharing stories, and the like. They can tell me they don’t like what’s happening and their dad and I will respect it, pivot, and find another way—or heck, just not do something. We ask them if they like their doctors and feel comfortable with them and make changes as necessary.
So I’m not going to tell you about what happened to my son. I’m not going to tell you the reaction my husband and I had to a grave injustice. Because that’s his reality, and even at 7—especially at 7—I want him to know that he has the right to own his experience without his parents putting it out there into the universe as a teaching moment. Because a mother’s trust is important, and I want my son to know that what he brings to me, he brings to me, and not the rest of the world. I want him to know that I won’t share it unless he wants me to.